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Ever go from not knowing you're having seizures to being aware you are?
Sun, 03/30/2008 - 19:22Hi!
I'm looking to know if it's possible for seizure types to change from when you're originally diagnosed, and if the way seizures happen can change. Things seem to be getting better for me in some ways, but also really, really strange in others.
Originally, I was diagnosed at age 5 with peti-mal seizures. I took meds until age 12. Well, age 16, I experienced another seizure (a bit more severe, don't know the type), got put back on meds and have been on them ever since - various combinations. I'm now 33 and currently I'm on Topomax 100mg 2 x day, Keppra 500mg 2 x day, and Clobazam 10mg at night.
The strange thing -- until a couple months ago I'd have seizures that would be absence or really minor complex partial seizures once in awhile, and am aware of most of the triggers to manage things. When seizures happened, people around me would pick up on it, I'd be totally out of it, unaware, unresponsive and unable to talk to people in a way they'd understand for about 20 minutes after.
Most recently, I've had a couple seizures where I sorta know I'm having them. Last Saturday, during a seizure my boyfriend was talking to me, I was talking to him, I sorta remember the conversation and I remember saying I have a headache, but I'll be ok, baby, I just want to chill out....my jaw is going to be sore isn't it.
Then, this week at work (I work in a call center), I remember it feeling like the lights were going on and off for a bit. I took a few calls where I broke 'em off (ended them), then I remember talking to a lady who said, it's okay, just relax, I'm probably not interested but I'll talk to you. While going through main part of the seizure I mummbled the sales pitch sorta, and wrote my bf's cell # on a note pad. Then I hung up my phone, walked over to my account manager & said "call this # I can't, tell him spacey says hi"...the rest is sorta hazey, but it's wierd to remember going through the seizure.
Is it possible to have things change in a way where you remember going through seizures? Any one else ever have this happen? Doe this mean I have to increase my meds or change them?
Any input would be appreciated.
Thanks.
Erin / Godiva
Comments
Re: Ever go from not knowing you're having seizures to being awa
Submitted by GodivaGirl on Wed, 2008-04-09 - 20:09
Thanks all for your input. I'm not sure if it's age, if it's stress levels or what, but I do know one thing - something is going on and it's REALLY strange for some reason. I also seem to be in a phase where I'm having more seizures. Thing is, I know I can't be pregnant at all (way too much protection in place). Interesting to read that seizure types changed switching to Keppra. I've been on that 2 years now, and it's about the last 6 mths I'm noticing this (went through a few months were I didn't always take it - no medical insurance - don't recommend that!). So, I guess when I see my neuro in June, I'll see what's up.
For now, I'll just hope live mellows a bit & I stop having seizures. Wow, is the inside of my mouth totally mangled!
Thanks again for all the input, I'm thinking it has to be either age (i'll be 34 in June), stress, hormonal, or Keppra. Hopefully my neuro does something. Until then, eatting lots of yogurt with Omega 3 is helping seizures & I get to live off that, pasta & ice cream - anything else hurts to eat. Fun! Fun!
~Erin/GG
Thanks all for your input. I'm not sure if it's age, if it's stress levels or what, but I do know one thing - something is going on and it's REALLY strange for some reason. I also seem to be in a phase where I'm having more seizures. Thing is, I know I can't be pregnant at all (way too much protection in place). Interesting to read that seizure types changed switching to Keppra. I've been on that 2 years now, and it's about the last 6 mths I'm noticing this (went through a few months were I didn't always take it - no medical insurance - don't recommend that!). So, I guess when I see my neuro in June, I'll see what's up.
For now, I'll just hope live mellows a bit & I stop having seizures. Wow, is the inside of my mouth totally mangled!
Thanks again for all the input, I'm thinking it has to be either age (i'll be 34 in June), stress, hormonal, or Keppra. Hopefully my neuro does something. Until then, eatting lots of yogurt with Omega 3 is helping seizures & I get to live off that, pasta & ice cream - anything else hurts to eat. Fun! Fun!
~Erin/GG
Re: Ever go from not knowing you're having seizures to being awa
Submitted by dpniner on Wed, 2008-04-09 - 12:29
Yes. Four years ago I switched away from Dilantin to Keppra and that fundamentally changed my seizure types. I had all the usual temperament issues with Keppra and eventually wound up hospitalized. While discontinuing Keppra and returning to Dilantin brought me closer to where I was before, my seizures types have not changed (it's been 2+ years). I once experienced primarily petite and grand mals during which I had no consciousness and a regular post ictal phase, I now experience psychomotor seizures during which I am fully conscious and have no post ictal period. There are still a few "traditional" petite mals whereI lose consciousness and have a short post ictal period, but those always lead directly into a psychomotor seizure now. For me personally, I suspect the Keppra unlocked some dormant potential in me and the psychomotor seizures are now closer to PNES seizures. I do still have regular "electrical" seizures however if I miss a dose of Dilantin or miss sleep. Hope this helps.